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Bioethics Blogs

Lifetime Achievement in Bioethics

Center for Practical Bioethics Founding Executive Myra Christopher Honored by American Society for Bioethics and Humanities 

Forty years ago, a young Johnson County, Kansas, homemaker stood by her mother’s grave and promised to spend the rest of her life working to ensure that those living with serious illness could have their wishes honored and values respected. That same year, her college philosophy professor introduced her to a new “movement” called bioethics that advocated for patients to actively engage in their own care. Following graduation, from 1984 through 2011, she served as founding executive director of the Center for Practical Bioethics in Kansas City.

On October 20, 2017, Myra Christopher’s four-decade journey will culminate in her acceptance of the 2017 Lifetime Achievement Award from the 1,800-member American Society for Bioethics and Humanities (ASBH) at the national association’s conference hosted in Kansas City.

Early in Christopher’s career at the Center for Practical Bioethics, she and her founding board faced challenges like court reporters, judges and lawyers appearing in hospital rooms to intervene on end-of-life decisions. Hospice care was, for the most part, still rare.

Unlike the half dozen academia-based bioethics centers that existed at the time, the vision for the Center was to create an independent, free-standing nonprofit that converts bioethics theory into services and resources to serve real patients, families, providers and policymakers facing real-life healthcare issues and crises in real time.

In recognition of Christopher’s role in achieving this vision, ASBH professionals from clinical and academic settings along with those from medical humanities throughout the country will present her with its most prestigious honor in afternoon ceremonies at the Sheraton Crown Center Hotel in Kansas City, Missouri.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

Florida Man Is First To Die Under New Lethal Injection Protocol

August 25, 2017

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A spokesperson for Janssen, the division of Johnson & Johnson that makes etomidate, told The Washington Post the company objects to the drug’s use in an execution.

Asay’s lawyers filed an objection to the use of etomidate, but the Florida Supreme Court denied the stay request, writing “Asay failed to establish sure or very likely risks of sufficiently imminent danger or a proposed alternative that is readily available.”

Jen Moreno, a lethal injection expert at the University of California, Berkeley Law School’s death penalty clinic, told the Miami Herald it was unclear if the drug would work. “There are outstanding questions about whether it’s going to do what it needs to do during an execution,” she told the paper. “The state hasn’t provided any information about why it has selected this drug.”

… Read More

Image via Flickr United States Government WorkUnited States Government Work

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The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Criminal Law and Neuroscience: Hope or Hype?

By Stephen J. Morse

Stephen J. Morse, J.D., Ph.D., is a lawyer and a psychologist. He is Ferdinand Wakeman Hubbell Professor of Law, Professor of Psychology and Law in Psychiatry, and Associate Director of the Center for Neuroscience & Society at the University of Pennsylvania. Professor Morse is also a Diplomate in Forensic Psychology of the American Board of Professional Psychology. He has been working on the relation of neuroscience to law, ethics and social policy for over two decades, has written numerous articles and book chapters on these topics and has edited A Primer on Neuroscience and Criminal Law (Oxford University Press, 2013, with Adina Roskies). He was previously Co-Director of the MacArthur Foundation Law and Neuroscience Project and was a member of the MacArthur Foundation Law and Neuroscience Research Network. Professor Morse is a recipient of the American Academy of Forensic Psychology’s Distinguished Contribution Award, and a recipient of the American Psychiatric Association’s Isaac Ray Award for distinguished contributions to forensic psychiatry and the psychiatric aspects of jurisprudence. 

The discovery of functional magnetic resonance imaging (fMRI) in 1991, which permits non-invasive imaging of brain function, and the wide availability of scanners for research starting in about 2000 fueled claims that what we would learn about the brain and behavior would transform and perhaps revolutionize criminal law. Most commonly, many thought that traditional notions of criminal responsibility would be undermined for various reasons, such as demonstrating that people really cannot control themselves as well as we believe, or as indicating that more action was automatic, thoughtless and non-rational than we think.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

When Women are Surrogate Mothers: Is that work?

Alana Cattapan, Angela Cameron, and Vanessa Gruben warn that speaking about “compensation” is a way of avoiding difficult conversations about payment to surrogates.

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A recent Canadian Medical Association Journal (CMAJ) news article reported that the Canadian Fertility and Andrology Society (CFAS) has called for the federal government to reconsider the ban on payment for surrogacy in Canada. The article suggests that industry professionals and academics alike are coming around on compensation for surrogacy, with support growing all the time.

In Canada, payment for surrogacy, egg donation, and sperm donation is banned under the 2004 Assisted Human Reproduction Act. Under the Act, surrogates (like egg donors and sperm donors) can be reimbursed for receipted expenses. With a note from their doctor, surrogates can also receive some money for lost work-related income during pregnancy.

The Act states that this reimbursement of expenses must follow the relevant regulations. Until now, however, these regulations have never been drafted. After more than a decade, Health Canada is now in the throes of making them. This is occurring as surrogacy in Canada is expanding to accommodate more and more people from countries where surrogacy is more expensive, harder to access or banned completely.

Women Working in a Field by Winslow Homer 1867.

It is in this context that the CFAS (which is a part-medical association, part-industry organization representing the fertility industry and its doctors, lawyers, scientists and ethicists) has called for the government to reconsider the ban on payment.

 It is important to know that the market in surrogacy in Canada is a profitable one.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Charlie Gard and the Ethics Commentator

Guest Post: Daniel Sokol

‘Best interest’ cases, such as the Charlie Gard case, are fundamentally about medical ethics, although they are determined by a single judge in a court of law.

At the hearing last week, there were at least 4 express references to medical ethics.

The first appeared in the hospital’s “position statement”, drafted by Leading Counsel, Katie Gollop QC:

As to the disagreements [between the parents and the hospital], one is a difference of opinion about the risks, benefits and ethics of providing our compound nucleoside treatment for Charlie after a time when his brain had become profoundly affected by his genetic disease.”

The second was a reference to the Hippocratic Oath: Counsel for the parents stated that the decision to offer the proposed experimental treatment would be consistent with the Hippocratic Oath.  I discuss this – and my current view on the case – in a blog for the British Medical Journal.

The third was the mention by the parents’ barrister of a bioethicist, whose article was included in the family’s file of evidence to the Court.

The fourth was the decision to appoint a clinical ethicist to chair a Multidisciplinary Team meeting on Monday 17th July 2017.

It is no surprise, therefore, that ethicists have commented on the case.  As the court is not expected to make a decision until 25th July, and as we enter a quiet season for the media, many more commentaries will follow.

I attended part of the hearing in the High Court last week. 

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

Charlie Gard: Judge Allows Parents of Terminally Ill Infant to Consult American Doctor

A London High Court judge has ruled that terminally ill infant Charlie Gard can be examined by a doctor from the United States, amidst his parents’ battle to pursue experimental therapy abroad instead of the terminated life support prescribed by his British doctors. The 11-month-old infant was born with mitochondrial DNA depletion syndrome, a rare genetic condition that causes muscular degeneration, respiratory failure and motor skill decline. Most children with the disease fail to live past early childhood; Charlie’s doctors have stated that it will eventually cause his death.

In Britain, courts rather than parents dictate children’s best interests in the face of opposing medical advice. Though Charlie’s doctors at Great Ormond Street Hospital were granted court permission in April to remove the infant from life support, Charlie’s parents’ lawyers have since been advocating for the right to maintain life support and pursue alternative therapy despite his doctors’ insistence on the low likelihood of the proposed therapy’s effectiveness, and the high likelihood of lifelong pain with the disease.

The high-profile case has attracted the attention of President Trump, Pope Francis, and anti-abortion groups, all of whom have vocalized their support for Charlie’s parents interests. Several notable medical authorities and colleges have expressed their support for the hospital’s consensus or condemned the politicization of the case. 

Following the judge’s novel permission, a New York-Presbyterian Hospital/Columbia University Medical Center neurologist will evaluate the potential effectiveness of a nucleoside therapy that has successfully prolonged the lifespan of similarly ill patients, though such patients’ conditions have owed to a mutation distinct from Charlie’s.

The case pivots on several bioethical questions that are particularly acute in the context of terminal illness. Where should the law draw the line between parental authority and medical authority? Whose preferences speak for a voiceless patient?

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics News

Charlie Gard, the sick baby hospital doctors want to disconnect. Our medical and ethical assessement

He and his parents await the Judge’s decision regarding the possibility of withdrawing or not the life support who keep him alive and the possibility of receiving an experimental treatment in the United States

Medical aspects

Charlie was born on 4 August 2016. In October the same year, he was admitted to Great Osmond Street Hospital (GOSH-NHS) in London, and diagnosed with a disease that affects mitochondrial function, called mitochondrial DNA depletion syndrome (MDDS). This means that he cannot obtain sufficient energy for his muscles, kidneys, brain and other organs, which causes progressive muscle weakness and brain damage.

Although there seemed to be no specific treatment for the mitochondrial abnormality at that time, in January 2017, his mother became aware of an experimental treatment using nucleosides that was being evaluated in the United States in patients with a disease similar to Charlie’s. Consequently, his parents assessed the possibility of taking him to the US for treatment because, according to them, it might improve their son’s health by at least 10%.

At the same time, British newspaper “The Guardian” announced that the US Hospital that had the medication offered to ship it so that Charlie could be treated immediately, but GOSH (NHS hospital) disagreed, proposing instead to withdraw the child’s respiratory support.

In effect, New York-Presbyterian Hospital and Irving Medical Center, also in New York, published a statement saying that they were willing to admit and clinically evaluate Charlie, as they had FDA approval for the use of an experimental treatment using nucleosides.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

Charlie Gard – A Different Kind of Medical Futility Conflict – No Transfer Allowed

Before the UK Supreme Court, attorneys for the


Great Ormond Street Hospital argued that the Charlie Gard case is not unique.  On the one hand, they are correct.  British courts have adjudicated dozens of medical futility conflicts, many of them involving children.  On the other hand, the GOSH lawyers are incorrect.  This case has two distinguishing features.

First, Charlie’s parents argue that the best interest standard is the wrong standard to apply in these cases.  The scope of parental rights is broad and they contend that a best interest test is not sufficiently respectful of parental rights.  Instead, Gard’s parents argue that parents may make any decision for a child, so long as it does not cause “significant harm.”  Of course, they are forced to make this argument, because the appellate courts will defer to the trial court’s judgment that the treatment at hand is not in Charlie’s best interest.  Charlie’s parents must make a legal argument that the judge applied the wrong standard.

Second, this case denied Charlie transfer to a willing and available provider.  This is remarkable.  In most medical futility conflicts, the hospital simply wants the court to give it permission to stop life-sustaining treatment.  Clinicians at the treating hospital do not want to administer the interventions the parents or surrogate want. But clinicians at the treating hospital normally do not seek to prevent other clinicians at other facilities from providing the disputed treatment. Normally, if there is another willing provider, then transfer of the patient is the preferred method of dispute resolution.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

CIA Torture as Human-Subjects Research

In the piece linked below, the author (a professor of sociology at the University of California) argues that modern norms governing human-subjects research are actually stronger, or at least more clear, than those governing government-sanctioned torture. Some of us professionally involved in research ethics governance might not agree that norms of that discipline are beyond debate. Also, we might wonder whether ‘exporting’ the norms of research ethics for use in prosecuting torture is likely to be good for research ethics, or will it end with a reversal: Some will begin with the premise that the CIA’s torture/research program is justified by its public-interest objectives. And if the CIA can, er, ‘break new ground’ in the ethics of research, then why can’t others?

The CIA Didn’t Just Torture, It Experimented on Human Beings by Lisa Hajjar (for The Nation)

… No one has been held accountable for torture, beyond a handful of prosecutions of low-level troops and contractors. Indeed, impunity has been virtually guaranteed as a result of various Faustian bargains, which include “golden shield” legal memos written by government lawyers for the CIA; ex post facto immunity for war crimes that Congress inserted in the 2006 Military Commissions Act; classification and secrecy that still shrouds the torture program…

…Rather, because the concept of torture has been so muddled and disputed, I suggest that accountability would be more publicly palatable if we reframed the CIA’s program as one of human experimentation. If we did so, it would be more difficult to laud or excuse perpetrators as “patriots” who “acted in good faith….”

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.

Bioethics Blogs

He’s NOT a Ward of the State: Legal Significance of Words in Clinical Setting

As a lawyer by training and working as a non-lawyer in a clinical setting, I hear legal words of art tossed around without knowledge of their meaning.  In many cases, wrong terminology is the least of the healthcare team’s concerns and it is not an issue.  However, there are times when correct understanding of the legal significance of a phrase resolves an ethical dilemma all on its own.  

The phrase I have been hearing lately in the clinical setting is “ward of the state.”  This phrase has significance for the health care team because it determines who has authority to make decisions for a patient who lacks capacity, such as patients with development disabilities (“DD”). The legal meaning of “ward of the state” means that the patient has a public legal guardian (as opposed to a family member or friend as guardian). For those who do not understand its meaning, those using the term are usually referring to someone who is receiving health care services from a state agency or living in a group home.  The key misunderstanding is that receiving state services does not automatically deem one a “ward of the state” in the eyes of the law. A patient could be receiving services from Office for People with Developmental Disabilities without having a legal guardian. According to the New York Health Care Decisions Act, a 17-A guardian is the one who makes decisions for anyone with an intellectual or developmental disability, including health care decisions.  This is a legal process. It is common for a facility with patients with disabilities to begin a guardianship process for their residents who lack capacity as part of their admission process, but this is not always the case.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.